Don’t be a passive patient

Aug 14, 2017 - reading time 6 mins

By e-Patient Dave deBronkart

Co-chair, Society for Participatory Medicine

After beating stage IV kidney cancer in 2007, Dave has become one of the world’s leading advocates for patient engagement. He works as a blogger, health policy adviser and international keynote speaker and is also the co-founder and current co-chair of the Society for Participatory Medicine.

A year ago, in “Could Data Make You Live Longer?”, I wrote about how improved care and improved public health are helping us live into our 80s and beyond, in unprecedented numbers: by 2050 nearly one in 20 of us will be over 85. My own mom is already there – she’s 88 this weekend! – I’m thrilled that my two super-sisters are on top of her care.

Five years ago they may have saved her life: transferred to a new facility after surgery, she met a new doctor, and her information in the chart was wrong. Somehow the data got scrambled, and he could easily have prescribed medication that would have been detrimental to her health. But my sisters caught the mistake before harm was done.

This is patient engagement in full flower: engaged family members contributed to chart accuracy, avoiding harm and all its consequences, at no cost to the system. How great is that?

Not everyone is so lucky. My friend Jack’s mother [not his real name] died prematurely because her cardiologist and oncologist didn’t coordinate, so an essential biopsy was never done. The information was available, but no single individual had responsibility or incentive to look for it.

This was a care coordination issue, causing care to fall short: each highly trained specialist contributed, but the system failed.

Such innocent mistakes can be lethal despite the best of intentions. A few years later Jack’s pre-school son, visiting relatives, went into anaphylactic shock as a drug reaction to Benadryl. He recovered and they entered “Benadryl” in the chart, but not why, so the chart had a gaping hole. Years later the boy got the same medicine and had the same severe reaction.

A mother’s early demise; her grandson potentially killed. Both because of holes in their charts. In such cases an activated, engaged patient and family can make all the difference. Are you prepared? Do you ensure in every case that all doctors know what they should?

We perform better when we’re informed better.

As an advocate for health improvement and health data, I constantly point out that nobody can perform to the top of their potential if they don’t have the relevant information. That applies to every one of your family’s care team, whether or not you’re there.

Ten years ago I survived Stage IV cancer by getting the best care in the world, but I also helped myself by finding additional information and bringing it to my care team. My wife, too, monitored my status and lab work in my patient portal. Neither of us is an oncologist, but we got involved – we did what we could to help the professionals who were saving my life.

In one meeting about my case, discussing treatment options, a resident noted “But he has migraines,” and I said “Not headaches – optical migraines.” I, a lowly patient, helped those highly trained doctors achieve their potential, by ensuring they got an accurate impression from what they saw in my chart.

Are you involved? Are you helping your family’s doctors do their best? Today’s electronic health records (EHRs) are sometimes a real challenge.

In July a storyraced through social media about how a pioneering Canadian doctor had decided to give up on her patient portal because of what a burden it was, adding hours a day of unpaid work. What if your family’s doctors are burned out too, and forget to enter something or run out of time?

Don’t wait to find out. Get involved.

Tackling the problem.

The simple but profound opportunity here is what I said in my TED Talk and in my book: “let patients help.” And since nobody can perform to the top of their potential if they don’t have the information, the best way I know to get started is for providers to share the chart with patients and family, and encourage the development of apps that will bring together the health data from all doctors involved. This way you – the patient – can see the whole picture, as best you can, and ensure every new doctor does too. For example:

Millions of patients in the US are benefitting from OpenNotes. It’s not a software product; it’s a movement in which providers modify their EHR to let patients see the visit notes. (I have this at Beth Israel Deaconess in Boston. It’s truly empowering – ask for it!)

Some doctors’ offices allow full online access to everything in their computers. As the saying goes, “nothing about me without me!” If you don’t have that, again – ask for it

Many app developers are doing the hard hard work of connecting to different hospitals and clinics to bring your health data together into a single picture. Different apps cater for different patient needs, but to name just a few, CareSync, HugoPHR, CareBox, ZibdyHealth, and MedKaz are all available now.

It’s still early days for this – pulling this information together is not unlike gathering information for your tax return from many places, except healthcare has a million more variables and some providers don’t want you to have the information. That’s why it’s important to get involved now!

The current state of future health needs your help.

The arriving future is better, but it’s not here yet.

Many smart people have taken on the work of being a health futurist. (My favorite is Bertalan Mesko, the young Hungarian doctor and “medical futurist” at Semmelweis University.) Their work is to clearly but prudently see the arriving future – which Philips calls Future Health.

Our job, as patients and caregivers, is to be equally clear and prudent about the current state of Future Health, because all care happens now. And today that means doing everything in our power to fill in the blanks that may exist in a patient’s information as it’s seen by each clinician.

We’re only at the brink of what we can accomplish when our technologists partner with our clinicians to develop solutions that enhance patient care and make our caregivers’ lives easier.

Indeed – and I’d add that patients can help. As always, this is no insult to the clinician – it’s a true partnership, in which every team member (including you) helps every clinician achieve their potential. I speak from experience: when I ask my doctors to discuss my chart and they welcome it, my trust in our partnership skyrockets.